All Blog Posts (320)

Death and Social Media

In July of 2013, NPR Weekend Edition host Scott Simon began tweeting from the ICU of a Chicago hospital. For the next week, as he watched his mother’s condition worsen until her eventual passing, he shared everything from interactions with ICU nurses to his mother’s…

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Added by psychonephrology on January 18, 2018 at 13:57 — No Comments

A shaggy Dog Organ Recital

A shaggy dog organ recital. My kidneys!  Tolvaptan, schlerotherapy 

The wonders of modern medicine!

I have a hereditary disease called polycystic kidney disease . Interesting! I inherited it from either my mother or father and my daughters have a 50% chance of acquiring it. No evidence they do. It results in the growth of cysts on the kidneys until the number and size of them shuts down the kidneys, necessitating dialysis and/or transplants.

Years ago I checked in with my…

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Added by Jerry diakiw on January 16, 2018 at 8:03 — 1 Comment

Dignity, death, & diarrhea

Well, I haven't "blogged", so will give it a "whirl". 

First of all: Merry Christmas to everyone!!!! I start with this because I am just home yesterday after some "quality time" in hospital. I have been transplanted x 18 years & very grateful for it!! However, as many know, this does come with costs, namely being more prone to infections & "special" things...

The beginning of December I knew I wasn't feeling great, but just thought it was the usual December influenza,…

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Added by lorlee99 on December 23, 2017 at 17:19 — 2 Comments

Four and a quarter hours

Can anyone tell me how the "standard time" for dialysis came to be 4.25 hours?

Added by Michael Collinge on December 23, 2017 at 8:16 — 1 Comment

Mindful Yoga for Managing Anxiety

Author: Lisa Mitchell

Whether it is the patient or the caregiver, diagnosis of a serious health condition like the need for dialysis therapy can bring turmoil and trigger anxiety.

The onset of anxiety affects you not only mentally but…

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Added by psychonephrology on November 29, 2017 at 12:57 — No Comments

Evidence-Based Medicine

Evidence-based medicine (EBM) is the use of research-informed information to direct the decisions of healthcare professionals in the delivery of services and management of the system. In the past several decades, evidence-based medicine has gain popularity in the United States, making it the standard mode of working in health care provision. In the application, the practitioners prefer applying principles that are based on scientific research and clinical studies rather than experience and…

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Added by Stephanie McMills on November 24, 2017 at 3:18 — No Comments

“I Don’t Want Dialysis” – Living with a Mother’s Wish

I still vividly remember her last night here. She wasn’t fully conscious. Just enough to keep pulling down the facemask providing her with oxygen and opening her eyes to stare at me, before she resumed dozing off. I have no idea if she knew I was there. Yet, I still sat at her…

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Added by psychonephrology on November 16, 2017 at 13:37 — No Comments

I’m new

Hi I’m new here,

I am 46. I have a GFR of 18 I’m just wondering how someone should be feeling day to day with a GFR of that number and is it normal to continue working at this point? I am not working at the moment. I am just exhausted all the time and am not really that alert. I’m feeling like a lazy bum all the time.
I’ve never been given any idea what is the norm is at this stage.

Added by Sass jane on November 12, 2017 at 18:36 — 2 Comments

Latest blood test results

EGFR 22 bicarbonate 19 hemoglobin 104 hematocrit 0.302 rbc 3.11 parathyroid 21.8 albumin creatinine 83.1 RDW 15.4 MCH 33.4

Low potassium diet helped and my potassium is in normal range now so so,e good news.... not gonna lie feeling a little lost about what to eat... anemic but can't have a lot of what has iron in it...

Added by SMK on September 10, 2017 at 14:41 — 2 Comments

Latest blood test results

EGFR 22 bicarbonate 19 hemoglobin 104 hematocrit 0.302 rbc 3.11 parathyroid 21.8 albumin creatinine 83.1 RDW 15.4 MCH 33.4

Low potassium diet helped and my potassium is in normal range now so so,e good news.... not gonna lie feeling a little lost about what to eat... anemic but can't have a lot of what has iron in it...

Added by SMK on September 10, 2017 at 14:41 — No Comments

3 years diaylasis

now  i am used to dialysis no hope for transplant .my mom is only hope and after  all painfull test done they said her gfr is 75 they need 80 so they refused to transplant. iam very disoppint and heavy heart after listen to this nnews.but what do i do just waiting some day i got transplant.

Added by mark on July 9, 2017 at 18:02 — 1 Comment

Should moving towards the end of life begin a conversation?

Being Mortal

Dying is an inevitable part of life. In the manner that we celebrate and discuss the process of birth, why we can’t discuss the process of death? Even for medical professionals, who have seen people…

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Added by psychonephrology on June 15, 2017 at 9:30 — 1 Comment

New Member

Hello:

My name is John Fife, from Perth, Ont.

I was diagnosed with an auto-immune disease called membranous nephritis back in 1991. For years this was manageable with medications, mostly blood pressure meds. My creatinine levels were around 160 for several years.

In Dec 2016 I suddenly developed a second auto-immune disorder called crescentic nephritis and my creatinine went to over 400 and my GFR down to 11. I was admitted to hospital and while there the creatinine went…

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Added by John Fife on June 1, 2017 at 9:41 — 1 Comment

1 Year Anniversary

 It's been almost a year  since my husband got his transplant and things have been going well.  His creatine levels are in the normal range and he is not retaining fluid at all. The only thing he has to be careful of is foods with potassium in them. He has so much more energy and feels so much better.  He comes in the house now, saying that he has to go pee, instead of coming in and being exhausted or being at dialysis. He is planning on writing a letter to the donor's family again. He did…

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Added by wildmojo on May 16, 2017 at 18:19 — No Comments

Smartphone Apps: A Patient’s New Best Friend?

About 1 in 10 people develop some degree of chronic kidney disease (CKD). It is imperative to follow certain dietary restrictions if you are diagnosed with a kidney disease, which sometimes, can be difficult to manage. Technology has made things easier for us and with the development of smartphone apps, taking care of yourself is easier than ever. Today, we have come up with some useful apps that are designed especially for kidney patients. 

To know more…

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Added by psychonephrology on April 26, 2017 at 11:14 — No Comments

NOTDAW - April 23 - 29

This week is a National Organ and Tissue Donor Awareness Week - from April 23 - 29.

It will be three years next month (May 27) after I donated my left kidney to my husband, Robert Lee.

Having two healthy kidneys is a blessing. By donating one of your spare is a…

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Added by Leta on April 24, 2017 at 20:15 — 1 Comment

Looking for mutual circumstances

Hi, I'm all new to this. I came across this while doing some online research for my 1 1/2 year old daughter who is at stage 3 kidney failure. Both kidneys are damaged from a rough start at birth. We're looking at a transplant in the future.

Right now she seems to be doing great other than bp medicines she's on, watching her diet and getting her to eat good.

I'm hoping to meet other parents on here that have been through a transplant with their child or need one at some point. Also,… Continue

Added by Sarah on April 18, 2017 at 0:34 — 2 Comments

Helping your child deal with death

Death can be a difficult subject and most of us feel uncomfortable talking about it. Death, however, does not differentiate, being an inevitable outcome for all of us.  Personal meanings of death can vary, though. Through the ages, for most of us, the best way to deal with it was with denial. Maybe this is the reason that most of us don’t think it’s appropriate for children to know about loss or death. But many children may encounter some form of loss, even in their early lives.

To…

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Added by psychonephrology on April 3, 2017 at 15:30 — No Comments

Donor awareness... message from a living kidney donor!!

We can live with one healthy kidney.

Please consider to be an organ and tissue donor.

Talk to your family and discuss about it.

A donor can save 8 lives!!



I am a living proof of a living kidney donor.  Anyone can be an organ and tissue donor.

These two wonderful kidney transplant surgeons helped me to fulfill my promise to my husband.  In two months we will be celebrating our 3rd…

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Added by Leta on March 29, 2017 at 12:30 — No Comments

34 months - A milestone!

Wow, today is exactly 34 months (in two months will be three years) celebrating and commemorating my husband's kidney transplant.

Everyday of my life I am so thankful for my husband, for keeping up with his new kidney (not new anymore), well it's now a 34 months old…

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Added by Leta on March 27, 2017 at 3:00 — No Comments

Members

Prefer to connect with someone by telephone?

Call Toll-Free: 1 866 390-PEER (7337)
A Kidney Foundation Program Coordinator will talk with you and discuss your request to be matched with a Peer Support Volunteer.

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